New here, and to RA | Arthritis Information

Hello everyone! I am so glad I happened upon this forum. My name is Amy. I am a 34 year old wife and mother of two. I was diagnosed with RA by an Immunologist and a Rheumatologist 2 months ago. I tested high positive on the anti-CCP blood test. Test results got me to a great Rheumatologist who immediately started me on Methotrexate, in addition to plaquenil, prednisone, folic acid, Aleve and Percocet for pain. I have even done a Methelprednisolone pack. I had some relief about one month into the MTX, it has been short lived, lasting only two weeks. Since then, I have had a few REALLY bad days, and the rest mediocre to bad days. I suffer most of my pain in my hands, knuckles and writsts knees and hips. Occasionally, elbows and feet. My DRs. have said with my high CCP antibody level, my RA will be aggressive. Sadly, I seem to be proving them right.

I have a couple of questions for anyone who like to answer. First, does anyone else suffer mostly in afternoon/evening. I am a bit sore in the morning, but tolerable. By 3 pm, I am a wreck. I try to keep positive, but struggling with that. Second, did anyone out there take a few months on the MTX with ups and downs before it kicked in? I am hoping that it will and I won't have to go to the Biologics.

Sorry for the long post. I look forward to getting to know the people here.

Hi Amy! I have two kids as well. My husband is a stay at home dad, and I sit at a desk all day, or else I would be a lot worse off. I am on MTX for 6 weeks now and so far I can't tell a difference. In fact my other joints are becoming involved, but that's mainly because I think they caught it early too and its still a work in progress. Mostly just my right wrist is really really bad and my left ankle is sort of, but now my hips and right shoulder are getting involved.

I am actually more sore in the morning, usually, but, like I said, I sit at my desk most of the day. Sometimes I have the "gel" effect with my hips/ankle but I do use my wrist a lot to write/type.

My anti-CCP was negative at 14 or so, and I'm RF negative, but my ESR and CRP were really high.

Anyway, good luck to you. Are you on an antidepressant? I am on Lexapro and it is working well for me, although I think it makes me a bit tired. Part of that though is that I think I sleep better (deeper) on the Lexapro

Thanks, Cathy!When I started on the MTX it took 3 months to kick in and probably longer before things started to normalize.
I knew things were working at some level pretty well from about two/three weeks but it seemed to fluctuate.

My mornings have always been better than the afternoons where I start to feel things and at worst, take myself off to the Ni Ni corner for an hour.
For me, having an afternoon kip has been the norm, I just get very tired.
A lot of people seem to struggle to get going in the mornings but I have been the complete opposite to that.
I guess we are all different.

Recently, I have the middle finger joint of my left hand all stiff and sore but that works itself to a manageable level after an hour.
I might have a touch of OS going on as PRED does not touch it but Voltaren does..

Welcome to the board and hope more anweres come your way.

By the way, I'm eighteen months into this and by some standards, just a babe.

Thank you everyone!

Stephen, Thank you for sharing that you, too, struggle in the afternoon and that your MTX took a while. It is so hard to "find my way around" this disease. Somedays I feel like I can/will handle it. Other days I feel scared and overwhelmed. I have a feeling this board will be a big help!!!

Hi Amy....Nice to meet you. I have two kids too. Son 15 and Daughter 20. Sorry about having ra but you found a good bunch of people here that can relate. You will find also that having ra requires lots of patience. The meds could take a few months to work and sometimes don't and then you have to try something else. I'm on enbrel and doing pretty good with it. I am mostly worn out in the evening from over doing things but my morning stiffness is gone and my energy level is up.

I hope ou find a good combo and soon.

take care

CinDee,

How long have you been on ebrel? Have you had side effects? I have heard it makes the pain so much better. But the listed possible (scary) side effects have me terrified to go there. They talk about increased lymphoma risk, etc. What did your Dr say about that? I have an appointment to see my Rheum. on Wed. so I am sure she will cover it, too. I am just curious what your take on it is.

THANK YOU!

I have been on enbrel since Dec. The only side effects I have is a itchy rash. I take benedryl a half hour before my weekly injection and then every 4 hours for two days. Gets rid of the itchy rash. There are risk with everything you take. The numbers are very low. I have tried lots of drugs that didn't help. The mtx was awful made me puke too. Couldn't tolerate that. Allergic to sulfa. Plaquenil didn't work. Humira didn't work. I don't take pred tried it once and refuse it because of the way it made me feel. THought I was having a heart attack! Everyone is different what works for me may or may not work for you. It's a long road but try to remain positive and having less stress is the key for me anyway.

take care

Thanks for the advice. My Dr has some more things in mind to try. I guess it is one day/ more meds/ at a timeWell, my best wishes for whatever you decide. Listen to what your dr suggests. Read up on it. He will probably have stuff for you to read. You're right.

One day at a time.

Let us know what your dr thinks. Remember he works for you. It's your body and your decision.

Hi from a fellow Minnesotan. Twin Cities here.

Sorry you are having a difficult time. I feel your pain. Just had an injection today into the base of my thumb. Not at all pleasant ( 1st time I've ever cussed out loud....at the doctor's office, anyway)

Since my diagnosis of sero-positive, inflammatory RA, I have been told many things by many "specialists" relative to how my RA would progress. Thus far, the predictions of only one of them has proven out, so try not to take some of the stuff they tell you about your particular disease progression as seriously as the way in which they present it. The one thing I have learned is absolutely certain about this disease is that there isn't anything at all absolutely certain about this disease. At least not for me and not so far.

Hope you're feeling better soon.

Hi Amy

Sorry to have to meet you this way, but welcome from a fellow Minnesotan! Sounds like you were diagnosed pretty quickly and started on meds, so that's a plus even though it may not seem like it right now. I tend to feel it more in the evening as well. Sometimes I think it's because during the day I'm busy and don't think about it until I sit down at night - or it's just that I've pushed myself a little too far some days and pay the price at night. I was on mtx for about 4 months, gradually increasing to 25mg before adding Enbrel this past August. I'm doing much better on the combo, and while it was scary to think of adding Enbrel, I am glad that I did. It may not be for everyone, but it's working for me and I feel like it's pretty controlled.
Take care

Cathy

Hi! It is always nice to meet new people, I just wish it was better circumstances. I have been on MTX. it caused me severe fatigue at first then it got better. I started having nose bleeds so the Dr. took me off of it. At that time I was also taking Enbrel it just wasn't doing anything for me . I am now on Remicade and have had my first Infusion . and can't wait for my second. I got so much relief from it. Of coarse I had to be off of everything for six weeks before starting Remicade( so know wonder I am a bit giddy....) I agree Cin. it's good to do your home work. There are a lot of great people hear to talk to and have a lot of information. Take care anutHi and welcome! I too tested positive with the anti-ccp about a year ago. Started with plaquenil, added in mtx 8 weeks later, and Humira 8 weeks after that. Six months later I still didn't feel like I was making much progress, so we switched to Enbrel, and increased MTX. At my most recent doctor appointment we upped the MTX again. I feel like I might finally be making progress. I am definitely not as stiff in the morning, and my hands are feeling better. So, hopefully I am on the right track. It is a delicate balance from what I have read, and since it is different for everyone, it's all trial and error until you get it right. Hopefully for you, you'll get it right soon. Best wishes.

Hi Amy!

I was one who progressively worsened during the day - but late afternoon I couldn't walk. Then, it the morning, I'd be stiff for a few steps, then fine...and the whole cycle would repeat itself. I was also diagnosed as 'early onset severe'.

If you want to, check out www.roadback.org or get the book The New Arthritis Breakthrough by Henry Scammell. We use antibiotics to manage our RA.

Hugs and never give up hope!

Pip

Hi, nice to meet a fellow Minnesotan. Sorry for the circumstances. I am guessing I will probably be heading down the same treatment road you did, as the MTX alone isn't helping much. I feel like I'm getting worse, actually. I am very thankful for the people on this forum. It's been less than 24 hours and I feel better mentally than I have in two months. I have a wonderfully supportive hubby, kids, parents, friends, etc. but they can't UNDERSTAND..the pain, the stiffness, the sadness, the fear, the frustration. I have felt very isolated mentally of late. I am so glad to find you all.

Thanks for your advice and sharing. I hope to stay in touch.

Have a great day!

AmyKatalina,

I am in the Twin Cities, too. Nice to meet you. You sound like one strong, loving lady, with a wonderfully helpful young boy. My son (who is 6) is also my "muscles" when I need him. He has a tender heart and is proud to help his mom. It is a blessing I am so much more aware of now.

I appreciate your advice about taking what the Doc's say as just their opinion. My Rheumatologist is very positive. My immunologist is more depressing. I am sticking closer to my Rheumy!

Take care and talk to you soon!

AmyPip,

Thanks for the link to the antibiotic protocol. I printed out some info to take to my Rheumatologist tomorrow.

Have a good one!

hi amy i have severe erosive ra 13yrs .. my treatment was mtx and prednisone 7.5mg
after 4 yrs the mtx stopped working. by this time all my joints were ruined..
i have used all the old traditional dmrds gold plaq etc due to pred use i do not
qualify for biologics.. pred is my only med now.. allthough my wrists are near fused
all my other joints show mild erosions..
hit ra hard and fast..

Boney I was diagnosed seropositive with my RF at 330 and Anti-CCP at 238. I was terrible in the morning, better as the day progressed, and then terrible at night.

My RD started me on Plaquenil and Relafen. I did great on just those for a couple of years. Then, I had months of on-and-off again prednisone. Finally started MTX last year, but didn't seem to make a big difference, so my RD added Enbrel. Ahhhh.... Enbrel. What a difference it has made in my life! I'm doing so well, I'm currently tapering off the MTX. I'm so glad I tried it.

My RD told me that Enbrel does not add to your chances of Lymphoma, rather, people with inflammatory arthritis are generally more susceptible (sp) to lymphoma than the general population. So, what she told me, b/c I am having a hard time phrasing this intelligently, is that the RA makes us more prone to lymphoma, not the Enbrel. Make sense? They do not see more lymphoma among Enbrel users, but they do see more lymphoma in people with inflammatory rheumatic diseases.

I am really tired, it's 11:20pm here and I've had a long day with the kids. Sorry.
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